October 30, 2012

The good in labels

I don't know that I've ever identified why it bothers me when people say they don't want eating disorder patients to be "labelled." I could sympathize with the concern that people would be pidgeon-holed and depersonalized but still, I chafed at this idea because it seemed to miss the point. It felt like push-back against applying available science and a way to protect every indefensible myth someone wanted to protect.

This resistance to labelling and naming disorders was both understandable and diminishing.

But today, a wise woman I know explained it perfectly and clarified my own belief, one I hadn't realized:

"for some people, having a label (or multiple labels) is therapeutic. It helps move from "What is wrong with me?" to "How can I fix it?"

That's it! I see labeling as the first step to getting to work. I see labels not as objectifying or stigmatizing or depersonalizing: but as recognizing a pattern that can then be addressed. The label is not a value judgement, or a summation, or telling us all that much about a person's whole picture - but an identifiable pattern shared with others for which there is some data and some solutions for some people. A label is a first step, not a limitation. 

The morning after Sandy

The electricity flickered and stuttered but stayed on for us - many in the area still without power. House intact, no trees down, and very, very quiet.

October 23, 2012

NEDA Alert

Dear Laura,
Good news! The Virginia Joint Commission on Health Care has included eating disorder school screenings in their policy options for the upcoming legislative session. They are now inviting public comment to determine whether to pursue eating disorder school screenings.  Screenings can be key in early intervention and prevention. Click here for more information about eating disorder school screenings.

Click here to submit your public comment by October 26th. A template is provided; taking action will take less than 2 minutes, and can make a tremendous difference!

Thank you for using your voice for progress!
Questions? Contact star@myneda.org. 
NEDA Logo
National Eating Disorders Association
165 W 46th Street
New York, NY 10036
P: 212.575.6200 F: 212.575.1650
info@nationaleatingdisorders.org
www.NationalEatingDisorders.org

October 19, 2012

Bring dad!

We have a few donated registrations available for the Alexandria conference, November 30-December 1 near Washington DC.

If you and your spouse/partner/other caregiver would like to attend the conference we can offer one of you a scholarship for free entry. This can be any other adult with whom you share caregiving duties or is supporting you in your job as caregiver for an eating disorder patient. We gave one to a grandmother supporting her daughter in supporting HER daughter, for example.

These free registrations are first-come first-served and although they are meant to help families with financial constraints there are no questions asked. You need it, you got it, if you qualify and contact me atLaura@feast-ed.org

For more information on the conference:
http://www.feast-ed.org/Conferences/Alexandria2012.aspx
 

October 18, 2012

now THAT'S what I'm talking about!

I wonder how different my ability to re-feed our daughter would have been if I had this video? I cannot believe how emotional I felt as I saw this; how relieved I felt for parents watching it, how validating it was. I thought of how practical and calm and realistic and normalizing this is to the more modern approach to eating disorders. Seeing something like this really helps me see how far we have come because THIS is the attitude about the illness and to families and treatment that I wish was widespread.

I'm have no doubt this film would upset many people - indeed, MOST people - treating eating disorders in more traditional ways. Yet they are the people I most want to see it. These families and this filmmaker and Kelty Mental Health deserve an enormous round of applause for creating this and making it widely available. A portion of this video was nominated for the F.E.A.S.T. Film Festival, and I've added it to my list of possible clips for that competition. Check out my list of favorites and let us know what YOU would like to be screened at the conference!

 

October 12, 2012

The meek are not blessed, they are just meek.

I am fortunate, in the normal course of my days, to observe the learning process and developing wisdom of caregiving parents.

This mother blogger, caring for her dear daughter, describes so well her challenge of asserting herself in her daughter's care:

" I realise I have become a little meek when faced with the clinic staff. I wait for their decisions about my daughter. But she is my daughter and sometimes I know better. She is not ill because we have a dysfunctional home or a poor relationship. She is ill because she is ill and this is in spite of the close relationship with her family and a happy home. I call the clinic and tell her primary nurse that I have an alternative proposal. "

at One More Mum's Blog.

October 11, 2012

Can parents PREVENT eating disorders?

OK, so I consider the question of whether parents cause eating disorders to be clear: no we don't.

But can we prevent them?

This all depends on what we think an eating disorder IS. I consider an eating disorder a built-in psychiatric response to energy imbalance and those symptoms of food refusal and compulsive exercise and binging and purging to be ones that with proper treatment can be put into remission. By that definition, no, parents can't prevent an eating disorder.

I do not consider the symptoms to be the cause or their absense to be the absence of an eating disorder.

In other words, if you are built to respond that way to inadequate or erratic nutrition you will have those symptoms no matter why or how you are undernourished. Therapy and insight and a different environment may help you avoid or cope better but they don't make your response to malnourishment change. And: if you are not undernourished those symptoms need not be part of your life at all.

Of course there are often co-morbid issues that drive malnourishment and make it a struggle to maintain normal nourishment. There are copious social and personal reasons a person may struggle to do so as well. But the illness itself is a paradoxical brain/behavior response when undernourished.

Yet I do think we play a possible role in preventing the onset of symptoms and an enormous role in stopping them once we know about this paradoxical brain problem.

I have wondered over the years whether a different family style around meals might have been protective for our daughter. I have wondered if my own growing dismay over my own weight gain during the years around our daughter's adolescence might have provided fertile ground. I also look at certain personal and international events and wonder "what if they hadn't happened and we hadn't had all that heightened anxiety in the house during that year?"

What I do know is that I'll never know. I'm also confident that the recipe for an eating disorder is unlikely to be that direct and obviously the same dish can have a number of recipes. I am dead sure that the greatest problem in the months after the diagnosis was my own confusion about these factors: they led to distraction and self-involvement instead of action and good sense.

If I could go whisper in my own decade-back ear now, I would recommend slightly different parenting, different modeling, and a higher sense of risk from events that seemed not to be as important at the time. I would go back and erase my own attempts at weight control, every time that I didn't speak up at a fat joke, and my buy-in to the belief that it was "healthy" to avoid certain foods and it was "normal" for a high school kid to skip breakfast and have track practice through dinnertime.

I would change those things not because they "caused" the problem, but because they messed up our response to the situation. What strikes me about the ubiquitous "prevention" advice to parents is that it implies a straight line and a dose-response: a little influence a little eating disorder, a lot of influence a very serious eating disorder. THAT kind of thinking about eating disorders is what I really, really wish we could prevent.

October 4, 2012

Decoding Anorexia: the book, and the necessity

Have you heard? Carrie Arnold's newest book, Decoding Anorexia, has been released.

I was fortunate enough to read it in advance, and have already posted my Amazon review.


Now, it's up to us. She's done her job getting the very science and analysis that all of us want out there. Books need readers. Books need reviews, posts, to be put on lists, links, and the author needs to be invited to talk about it. Books need Facebook friends and Twitter Tweets and Amazon reviews. Books don't just walk off shelves and put themselves in baskets, they aren't sitting on soda fountain stools waiting to be discovered. There are hundreds of thousands of books published every year and if a book is going to make it to the eyes of readers who need it they need the collective wave of readers to move it up and out and far. This book deserves to cry and say "You LIKE me! You really LIKE me!" and weep a bit.

If you are, like me, a fan of Carrie's blog and writing, we have our job to do. BUY the book (I always buy two-three copies of any friend's book). Read the book: it isn't the usual and it goes deeper and with more insight than you expect. Review the book in at least two places - it matters! Suggest the book to those you agree with who will like it AND those you don't agree with and know will be challenged by it. And tell Carrie. People forget that authors are actually people like us. Authors like to hear from readers: that's the POINT. We even like to hear from critics.

So: buy, read, recommend, and email. You have your instructions.

Who is the weight-shaming bully, again?

Well, here's good news. A public figure stands up against weight-bullying and calling people fat. Other people cheer. That is important and a cause I usually only see in eating disorder circles where, I have often argued, it should not only be.

Except in this case I wouldn't call it bullying and no one was called "fat." Maybe that doesn't matter, but it strikes me that if our rallying call against weight-shaming is based on this example we probably aren't doing ourselves a long-lasting favor.


The email to broadcaster, Jennifer Livingston, didn't call her "fat." It called her obese. That's worse than being called fat, frankly, because our entire society is being taught by our doctors, media, and government that our weight status is a matter of alarm and a visible sign of chosen ill-health. The email called obesity a choice - something that everyone including our children are being taught daily, given "report cards" and public service announcements about as the only reason to be healthy is to avoid the dreaded fatness that adults are so on about. We have public figures showing off their fitness on TV in a fight against this evil obesity monster as an example of What To Be, which of course is the corollary of What Example You Should Not Be. Is this guy's email different?

Folks, we can't expect the world to stop fat shaming at the same time we are surrounded by messages that not only do that, they normalize it.

This guy's email wasn't bullying, in my opinion. His misguided, deeply personal, demonstrably wrong letter was symptom, an expected symptom, of looking at a person's weight as public property and a matter of morality.

This guy is ignorant and wrong. He doesn't know this person, and he doesn't understand the basic mechanics of weight. He treated this woman's weight as he would if she was smoking on air, or knocking back a beer while reciting children's literature. But he learned that the same place our kids are learning it: from our doctors and governments.

Had this guy called her "fat," well, it probably would have been dismissed as an epithet or curse. THAT kind of weight-shaming is everywhere, too. What is more frightening is that he called her obese and a poor example to children when the truth is that his attitude is what is the threat to children. The idea that being obese is anyone's else's business or tells anyone anything about that person is what is toxic.

I absolutely love what this woman and her husband did: they got mad and they put it back where it belonged, on the ignorant head of the email writer. But the real bullying is going on - victimizing and isolating people based on body size - in every school, on TV, at dinner tables, and goodness knows on the Internet by ADULTS in charge of healthcare policy and treatment and education.

Weight shaming is toxic stuff: it ruins lives and encourages really unhealthy attitudes and eating habits. It's no different than racism or sexism in its insidiousness and waste of human spirit. Yet the place to start is not with this guy saying what the 'experts' and authorities and our healthcare providers are telling us. We are all being bullied, and it is coming from the top.

October 3, 2012

Follow conference news

We have a new blog for following the F.E.A.S.T. conference in Alexandria:

http://feast2012alexandria.blogspot.com

Go subscribe now!

Do you realise how much strength, and how much bravery it takes to ask for help?

We can all wax poetic and rail away in frustration at how misguided eating disorder treatment often is and how challenging the illness is but frankly, is it not a greater problem that there are so few resources of ANY kind out there?

In my community there are no eating disorder specialists at all. There are no psychiatric facilities for at least an hour's drive and those are small and lack any eating disorder support. There is no eating disorder inpatient clinic for almost two hours away. There are waiting lists for most clinics and that's assuming there is insurance or personal funds to pay for it. I live very close to a major US city.

For most of the world it isn't a matter of what methodology or modality or training or family involvement it is a matter of there being no treatment at all.

This moving, wonderfully written story, out of Australia, is harrowing. This is true almost everywhere, folks.

What I see out there is that some people are fighting for ANY kind of treatment and feel undermined by those of us who are asking about the quality or content of that treatment. These people are rightly concerned that families have no resources at all.

But people like me don't want to be supportive of treatment that is misguided or even part of the system of unsuccessful and undermining treatment that exists. There is an obvious way to resolve this, of course. We need to ally together and insist on both: availability and standards. Unfortunately, I don't see that happening because the two sides of this debate don't see one another as allies.

Register for 2012 F.E.A.S.T. Conference in Alexandria



 Have you registered yet for 2012?

October 2, 2012

Carrie Arnold pits sensible against silly

Carrie Arnold's piece in Slate does something all too rare in eating disorders writing: she's reasonable. Reason and reasonable are rare real estate in ED literature and she is about to be the major landowner as her third book comes out.

Decoding Anorexia:
How Breakthroughs in Science
Offer Hope for Eating Disorders
It's hard to be reasonable about anorexia. People are so exercised (ahem) about their little corner of belief. I plead guilty on that myself. We are at pains to be heard on OUR point, to beat down THAT other point, that no one loses.

In Slate, for example, Arnold doesn't try to paint anorexia into an ideological corner. She doesn't try to make the disorder into a specimen of cold mechanistic levers. She doesn't try to balance (the refuge of poor thought) talk of biology with some requisite amount of social influence, she simply acknowledges it.

At the same time, she takes on some tough stuff here. It's a bit heretical not to go with the popular flow on culture causing EDs. But someone needs to speak up without falling into the nature OR nurture trap. It is reasonable to acknowledge culture in eating disorders, but to put it in context at the same time: a diversion from the larger picture. I'm so grateful to her for this, and for this article.

Looking back at last year's F.E.A.S.T. conference and planning for the next

Last year's F.E.A.S.T. conference in Alexandria was a resounding success. If you were there, you know what it was like to meet all these families, hear all these speakers, and feel the collective spirit of the community.

alexandria 2011 conference f.e.a.s.t. videos
We're just 57 (gulp!) days from the 2012 conference and it is time to release the videos of presentations we took at the 2011 conference to the public. Until now, you had to be a member of F.E.A.S.T. to see them and Google couldn't search for them, but now they are available to all. Although we are making them available to all, please still become a member of F.E.A.S.T. if you are not: we want to hear from you! (membership is free).

So, please visit the new wonderful page with all the videos and descriptions, as well as Posters and Powerpoints.

Try not to laugh, or count up the incidences, when Laura cries. It was a pretty amazing week.

Want to be there for the 2012 conference, which features a Congressional Briefing, a Ruby Slipper party, and special Keynote speaker, Jeff Bell? Register NOW.